Marilyn, I second his comment - good job. This is something most, if not all, of us could do. Clubs like Rotary are always looking for speakers. I just put together some of the comments that have been on this site and mixed in my own experiences. I, also, ended with what needs to be done to help us. We need to do all we can to educate the general public as well as the physicians.
Yes, Marsh, there is so much that needs to be done to educate the public. At a Superbowl party on Sun., two women asked me what I do all day. I was a little taken aback--one is in the medical field--works with nursing homes--is familiar with dementia. Part of me was amazed that people have no idea of how much is involved taking care of someone with dementia. When asked that question, I usually mostly focus on the work I do with the Alz Assn and Johns Hopkins regarding AD awareness--they are interested in that. I don't know how many would be interested in a litany of: I take care of all finances, investing, taxes, house, car, social, medical, feeding, clothing, etc., etc. Someone should do a documentary on the life of an AD caregiver!
Seven of us (all women) were watching the football game. One was a recent AD widow, one was looking to place her husband very soon and of course-me. The other four women understood what we are going through. The message is getting out there. I talk to anyone who will listen.
For me, part of the lack of understanding is because my husband was diagnosed at 59. Many people still are unfamiliar with EOAD and the ramifications. Most of our friends are still working, and their lives are lightyears away from ours. Some have parents who are still in better shape than my husband (cognitively). So it's hard for them to "get it".
marilyninMD wrote: "Some have parents who are still in better shape than my husband (cognitively)." Yes, yes, yes! My friends can't imagine. My husband is early stages of LBD and I am still working--in a very different stage of life than most of the people in the local support group (I'm 53 and he is 63). And as someone who grew up in the northeast and now lives in the southern US, I feel a particularly big cultural gap between the generations. I'm a feminist. How do I make sense of that now?
I find where I live in Northern Minnesota, almost nobody heard of EOAD. Every time I go to the Doctor I'm given a chance to step up on my soap box and tell about it..... I can't get over the amount of open ears who want to know....first hand. Yesterday I went to a specialist for a sinus infection and when I said my husband has alz. he sat up and asked lot's of questions....He was shocked at what I had to say........ He acted like he didn't want to let me go. ha ha.......
I always feel good when I can educate even one person....hoping that one will share with others. I wished I had a hidden camera to take a picture of their face when I say "it can be you tomorrow"..................
Bluedaze .....thanks. My dad named me Cynthia but called me Cynfany : ) I'm quiet and shy but if someone asks me about EOAD I can't stop myself. My mouth just goes....and there is so much passion in what i say I usually get tears, a hug and or genuine hand shake with lot's of thank you for sharing your story......
pamsc--I didn't mention it, but my own Dad, who is 94, has a healthy brain. Dementia doesn't seem to run in my family, thank goodness. It is quite a challenge for me to "put one over" on my Dad and try to minimize my husband's dx. I only pray that my Dad passes on before he sees what will become of my husband. My Mom passed away 5 years ago (before dx) and I am so glad she never knew about it.
marilynin you are very lucky your dad still has a good mind. My Mom had a good mind until 6 months before her death. She could remember better than I could. I was so thankful for that. She passed this May and lived with us. She commented on dh many times, that he was worse off than she was.
My husband's dad is sharp as a tack at 83 years old. As bad as I feel for my husband, I also really feel for my father-in-law. He has seen his mother-in-law, wife & now his son going through the same things in his 50's.
Imhor, Yes, I know we are lucky about my Dad. I cannot imagine what it would be like to have both he and my husband struggling with AD. My Dad was able to be my Mom's full-time caregiver and keep her at home literally to the end of her life, even though he was in his late eighties at the time.
Kadee, That's why I don't want my Dad to get the full impact of what's happening to my husband. As I mentioned, we are blessed not to have dementia in our family. He's a very intelligent man, but he's never seen the ugly side of AD, and I want to keep that part quiet. He's concerned about my husband and how it's affecting my life, but I try to emphasize only the memory loss and gloss of the other deficits, personality issues, etc.
We were at our PCP's office yesterday and I thought about this thread. She finally told me that Steve is the first person she's met with EOAD. She's young (in her 30's). She also said that all her other dementia pts had been far along into the disease when she met them--she has never witnessed the decline from early to middle to late stages. So once again, he and I will be, in effect, teaching her what EOAD, progressing through the stages, and dementia caregiving are all about. Not only will she the decline in him, she will also be aware of the possible impact this has on my health. Those of you with EOAD spouses should be aware that you are probably in the same situation with your doctors. Other than the neuros, you will be better informed about the disease than most physicians. I think that puts an added responsibility on the caregiver in that we need to take an even more active role with the doctors, because they are used to dealing with this illness is a much older population.
Forgot to say, since he's in perfect health except for his brain, she doesn't really need to see him often. (Code for there's not a darn thing she can do, except be sympathetic.) Once a year is fine, unless he catches something. Just keep going to the neuro.
I am in a bad mood before I even get dressed - This morning Sid has an appointment with his urologist. The one who says, every damn time we are there - well, I don't see where you have Alzheimer's Disease. He actually asked who diaganosed Sid. When we told him who it was (a very well known and respected neurologist), he was surprised, and said if Dr. S. diagnosed it, then it must be true. Last time we were there, I was so aggravated, I told him straight to his face, with Sid sitting there - "You don't live with him. You don't know what is really going on. And I am here because he will forget whatever you told him by the time we get to the parking lot."
I just thought of something. One of the study doctors in Sid's Memory Disorder clinic is all worked up and upset about doctors and others telling AD patients - I don't see anything wrong with you. He says it feeds the denial and makes things worse (He doesn't mean they should say - You're in bad shape. He doesn't want them to say anything.) I'm going to talk to him about doing some physician educating like Marsh does.
Joang, I think it is time for you to get Sid a different urologist. Anyone this insensitive to a Dementia patient and family should not be their Doctor. No wonder Sid thinks there is nothing wrong with him when even Doctors voice this opinion. We have been to quite a few Doctors, Optometrist, Urologist, PCP, Dermatologist and NOT ONE of them has questioned about Dementia diagnosis in his presence, even in early stage. I would be horrified if they did so. Sorry, just venting. Good Luck with your apointment. Lois
Joan, I wonder if he would say to his patient with cancer, "You don't look like you have cancer" I am with Lois, I would either find another doctor or e-mail this guy & tell him he needs to stick to urology.
1. Write a personal letter to the Urologist, keeping it brief, and telling him that his comments do not help in your continuing care of your husband who has yet to truly accept his diagnosis. (whether that is a fiblet or not). Stress to him that it's important the medical team be united, ... and although he is not required to CONFIRM Sid's diagnosis, it's important that he not QUESTION it.
2. You can request his Neurologist to forward a copy of his "diagnosis" to the Urologist.
Perhaps both would make a difference. You've mentioned this situation before, and it's rediculous. The Urologist would be more trouble than he is worth if he merely "suggests" nothing is wrong with Sid, because, if anything, that would suggest to Sid that the Neurologist is WRONG! Which, as the dominos fall, makes your position even that much harder to deal with.
I think the Urologist may believe that by saying Sid looks "GREAT..and not like he has FTD" (as if he should have spots on his face).. that he is flattering Sid. His comments are highly inappropriate!
Joan, If you and Sid both like this dr. and his care, other than this comment, I second the idea of Nancy and the letter. It is such a pain to deal with finding/seeing a new dr. But, if this is just one part of a problem with this dr., it is time to move on. PatB
undermining another drs diagnosis of that magnitude is shocking to say the least. i couldnt call him a dr in my book if hes capable of offering such a statement to the patients face. thats inexcusable. you should get yourself another urologist and send a letter of complaint to him personally and let him know that such comments have made your life miserable with issues with DH believing his comments. he should be reprimanded by the medical board in my book. if he is in a practice with other uruologists, ask to have another colleague see sid next time! that would give him a slap in the face for his insensitivity and bad judgement. and let another or new dr know upfront that was a concern for you-divvi
Well folks, you're gonna love this. Today was the end of that urologist for me. I am not going to go into specifics of Sid's urology issues - he deserves privacy on that. First it was the same old - "You don't seem to have any Alzheimer problems to me." To which Joan said - "You see him for 20 minutes every 3 to 6 months. You could not be aware of what his problems are. I can assure you, he will not remember a word you said by the time we leave this office." To which Sid replied, "My short term memory is shot."
He looked at Sid's medication list (which I had carefully typed up), and said, "Celexa? Are you really that depressed that you need that? Eliminate that one and it will help ( the urology related problem)." Three times, he said that he didn't see the need for the Celexa. To which Joan said, "He is on that medication for a reason. He needs it, and both Dr. S and Dr. K put him on it and want him kept on it. He is not going off of it." He backed down when he heard that both those highly respected doctors were working together in treating Sid.
Besides which, I kept repeating, the problem you are trying to treat started TWO YEARS BEFORE he went on the Celexa.
Joan, you MUST write him a letter. He is the most insensitive human (not to mention his title) I have ever heard of. Not that you don't have ENOUGH trouble getting Sid to take the meds. Our men have selective memories on occasions, and I can just picture Sid saying "The DOCTOR SAID I don't need to take that!"
I had a problem with one of Foster's neurologists about 5 years ago and tried to change (within the practice). I was told that the doctors had an agreement that didn't permit patients switching among them. I said fine...and changed to another Neurologist in a totally different group.
My DH had prostate cancer, radiation and is fine now, but we go once a year to his urologist for PSA and check-up. DH always tells him he has ALZ. Dr. always says, yes, I know that and I'm very sorry you and your wife has to go through this. Then he will ask DH - "are you doing everything your PCP and your wife asks you to do?" DH always answers yes - most of the time! He's a great doctor, very young, but very sensitive and understanding. The first urologist he had though - well, we won't go there - but we changed immediately.
No, he is my cousin's urologist. When we moved here, we had no idea who to go to, so we went to him. I was thinking of swtiching anyway, because he is almost an hour away. We're going to find someone in our area.
I agree, send the letter. If nothing else, it will feel good to "straighten" him out- even if he never gets to read the letter. It's worth the stamp to say "GOODBYE!!!!!!" Looser. Go Joang. If you need help, I'm certain we can each write a paragraph. Hey, maybe that would be pretty "healing" for the rest of us who have delt with these clods!!!! Actually, I am quite certain you don't need us, it was just so much fun thinking of all the things we could say!!! DO IT!!!!!!!!!!!!!!!!
There are more than just doctors that need educating...I am considering buying a harness for me, and a label that says I am a working caregiver for eoad...sort of like they use on seeing eye dogs....that might help these clueless doctors in their dealings with patients...